Smiley

Trini has had a great week! I don't know why, but she is smiling all the time. I love it! We went to Newport on Wednesday. She loved it! I think her cheeks got tired from the smiling. LOL She was smiling so big that she made people smile when walking past her. I love it! She has been looking around a lot too, which is new. She seems to be improving more and more each week. I can't wait until it's nice enough to take her horseback riding! She is more alert than the last time she rode Magnum. It will be so much fun! It has been over a year since she has been in the hospital! I'm going to have to take her in for a visit to the PICU so they remember me. That is where I desperately want to work, so I need to keep up the contact for when I graduate nursing school....if ever.

Infection

Trini has an infection in her g-tube. It's kind of a panic moment when I see it. She has never has a problem with it ever. I am calling the Dr.first thing in the morning. My poor baby! One thing after another with her! We just got her off one her seizure meds. I might have to put her back on it. :-( Her birthday is next week. 4 years old! Wow!! 4 years of ups and downs. We are getting more ups than downs now. Yay!

Make a Wish!

Triniti got a letter from Make a Wish Foundation! She is getting a wish!!!!! I am hoping to take her to Disney land to meet Cinderella, see the starlight parade and ride the dumbo ride. They are supposed to get in touch with me within a month and she gets to go in 6 to 9 months. I can't wait!

Finally an update

What a year this has been! A whole lot of nothing has happened. This month marks one year since she has been in the hospital. Amazing! She used to go in every three months like clock work. She has colds and maybe the flu, but nothing major. She did have pneumonia last week, but smiled through it. She wasn't getting any better, so we took her for another 3 hour Dr. visit with xrays to find out she has an ear infection. No wonder she has had low grade fevers and has just been droopy. So she is on meds. for that. She is now having tons of seizures because of the infection. Hopefully it will be gone soon. I hate it when my baby is sick! I think if we hadn't switched around Dr.s, she would have ended up in the PICU. I credit Dr. Mcdonald and Dr. Konkol for saving her life! Dr. Mcdonald put her on inhaled Tobramycin every 28 days for 28 days. It gets rid of any bugs in her trach to the tune of $4500! Worth every penny! Dr. Konkol suggested the VNS which has made her more alert, has less seizures and is generally more happy. Who knows where she would be if she had stayed with her old Dr.s? I know where, but don't want to think about it. I was putting her to bed the other night when I saw a hospital bracelet on the floor. I have a habit of keeping them to remember the visit. I picked it up and looked at the date. 12/17/07. The day she died on her bedroom floor when CPR failed to bring her back. The thing that really got me was that I was standing in the exact spot she was laying on as I looked at the bracelet. How strange that I found it there and stood in that spot! I wonder if God is trying to tell me something. It was just strange....

Medically Fragile Meeting

Trini belongs to the medically fragile program. They pay for almost everything and she gets the oregon health plan because she is on this program. She has to re-qualify every six months. I am always nervous at these meetings. This one went great! She is getting more nursing hours. I don't know why. I probably won't use them. But they are there if we need them. We have a bigger budget now too. The lady from the county disability office was here too. She said Trini most likely qualifies for "Make a Wish". She is going to check into the whole family and possibly a nurse going to Disney Land! Yay!! I hope it works out! Apparently, disabled kids get to go the front of the line too. :-) Her m.f. caseworker said we should have the news do a story of before and after acupuncture to raise awareness on acupuncture and maybe get someone to pay for it. I think I may be emailing channel 12. We will see... Other than that, not much going on here. That is a good thing.

Update

It has been a long time since I have posted!! Not a lot has gone on. She gets her VNS turned up every 2 to 4 weeks now. As soon as the Dr. turns it up she starts smiling. :-) It makes the Dr. smile. She had it turned up last Wednesday. She immediately started smiling and got really alert! She has still been having seizures, but the magnet makes them go away pretty quick. Since getting the VNS turned up, she has had only a few full-on seizures. She has been having one start and it goes away within a 1/2 second! I am so happy!! Trini is very alert too. Her eyes have been moving a lot and she has been smiling. It's so exciting!! She is going back to school in Sept. She got a cotton motorcycle jacket, a pleated skirt, knee-highs with ruffles and "ugg" boots. Soooo cute!!

Surgery

She did great with surgery! I was so scared when it took longer than they said it would. I almost cried when they said she was in recovery. I was so relieved! She is not on any oxygen, which is amazing! She is a little painful, but she will get better every day. She is a trooper!